Health Care in Flux: Executive Orders and Federal Regulations

President Trump, with great flourish, signed an Executive Order on October 12, 2017 that, if and when it is implemented, will expand lower-cost insurance options under the Affordable Care Act or Obamacare.

This action is separate from the decision by Trump to cut off payments to insurance companies to subsidize moderate to lower income policy holders who buy insurance through the ACA exchanges. This action has an immediate effect, unlike the signing of the Executive Order that calls for changes to healthcare regulations. The process of changing federal regulations can take months to years to implement.

An article in Kaiser Health News (KHN), “Trump’s Order Advances GOP Go -To Ideas To Broaden Insurance Choices, Curb Costs”, by Judy Appleby, 10/12/17, explains the intent of this particular order as well as other details including the pros and cons:

“The Trump administration Thursday advanced a wide-ranging executive order aimed at expanding lower-cost insurance options, allowing employers to give workers money to buy their own coverage and slowing consolidation in the insurance and hospital industries.

“Critics said that, if implemented, the changes could result in more bare-bones coverage and pull healthier people out of the already struggling insurance markets, leading to higher premiums for those who remain in more-regulated coverage.

“President Donald Trump’s action, which will not take effect in time to affect the upcoming open enrollment for coverage in 2018, signals a shift in the administration’s strategy, which relied on Congress to repeal the Affordable Care Act. Trump is now using the force of his executive rule-making authority to implement long-favored GOP policy alternatives.” [emphasis added]

Before there is widespread panic that millions will immediately lose their health insurance, the good news is that it will take some time before that happens and perhaps agreements between Congress and the President to shore up Obamacare will occur before this policy can go into effect. The bad news is that judging by the current state of this debate, such an agreement is highly unlikely.

What is an Executive Order?

This is from Wikipedia:

Executive Orders are presidential directives issued by United States Presidents and are generally directed towards officers and agencies of the U.S. federal government. Executive orders may have the force of law, if based on the authority derived from statute or the Constitution itself. The ability to make such orders is also based on express or implied Acts of Congress that delegate to the President some degree of discretionary power (delegated legislation).[1]

Like both legislative statutes and regulations promulgated by government agencies, executive orders are subject to judicial review and may be overturned if the orders lack support by statute or the Constitution.[2] Major policy initiatives require approval by the legislative branch, but executive orders have significant influence over the internal affairs of government, deciding how and to what degree legislation will be enforced, dealing with emergencies, waging wars, and in general fine-tuning policy choices in the implementation of broad statutes.

If you have doubts about whether Wikipedia is an authoritative source of information, that depends on the subject. This entry jibes with what I have read before about executive orders and I’m sure there are many other authoritative sources to confirm the information.

How does the federal rule making process work and what does this have do with you?

There’s nothing like a civics lesson to take your mind off the horrifying prospect that your family member with a disability and who-knows-how-many pre-existing conditions, could be priced out of health insurance or denied it altogether.

One way that people with disabilities and their families can have an impact on proposed changes to healthcare is through opportunities afforded for public comment during the rule making process.

“The Guide to the RulemakingProcess”, prepared by the Office of the Federal Register, is a handy tool for individuals and organizations that want to follow and comment on proposed changes to federal regulations.

Here is another handy definition from Wikipedia:

“The Federal Register, abbreviated FR or sometimes Fed. Reg., is the official journal of the federal government of the United States that contains government agency rules, proposed rules, and public notices.[1] It is published daily, except on federal holidays. The final rules promulgated by a federal agency and published in the Federal Register are ultimately reorganized by topic or subject matter and codified in the Code of Federal Regulations (CFR), which is updated annually.”

Here are a few excerpts from “The Guide to the Rulemaking Process” that will help assure your participation:

How does an agency involve the public in developing a proposed rule?

An agency may take some preliminary steps before issuing a proposed rule. They gather information through unstructured processes and informal conversations with people and organizations interested in the issues. If an agency receives a “Petition for Rulemaking” from a member of the public, it may decide to announce the petition in the Federal Register and accept public comments on the issue.

An agency that is in the preliminary stages of rulemaking may publish an “Advance Notice of Proposed Rulemaking” in the Federal Register to get more information. The Advance Notice  is a formal invitation to participate in shaping the proposed rule and starts the notice‐and-comment process in motion.

Anyone interested (individuals and groups) may respond to the Advance Notice by submitting comments aimed at developing and improving the draft proposal or by recommending against issuing a rule. Some agencies develop proposed rules through a negotiated rulemaking. In this process, an agency invites members of interested groups to meetings where they attempt to reach a consensus on the terms of the proposed rule. If the participants reach agreement, the agency may endorse their ideas and use them as the basis for the proposed rule.

What is the role of the President in developing a proposed rule?

Before a proposed rule is published in the Federal Register for public comment, the President, as head of the Executive branch, may take the opportunity to review the rule. The President is assisted by the Office of Information & Regulatory Affairs (OIRA), which analyzes draft proposed rules when they are “significant” due to economic effects or because they raise important policy issues. For significant rules, the agency must estimate the costs and benefits of the rule and consider alternate solutions….

What is the purpose of the proposed rule?

The proposed rule, or Notice of Proposed Rulemaking (NPRM), is the official document that announces and explains the agency’s plan to address a problem or accomplish a goal. All proposed rules must be published in the Federal Register to notify the public and to give them an opportunity to submit comments. The proposed rule and the public comments received on it form the basis of the final rule.

What is the time period for the public to submit comments?
 

In general, agencies will specify a comment period ranging from 30 to 60 days in the “Dates” section of the Federal Register document, but the time period can vary. For complex rulemakings, agencies may provide for longer time periods, such as 180 days or more. Agencies may also use shorter comment periods when that can be justified.

Members of the public may request that the agency allow more time to submit comments, and agencies may consider late‐filed comments, if their decision‐making schedule permits it. Commentors should be aware that agencies generally are not legally required to consider late filed comments. Agencies usually provide information in the proposed rule and/or their procedural rules indicating whether they will consider late‐filed comments.

Do agencies have additional options for gathering public comments?

During the comment period, an agency may also hold public hearings where people can make statements and submit data. Some agencies operate under laws that require rulemaking hearings. Others may hold public meetings to collect more information or to help affected groups get a better understanding of the proposed rule. Many agencies are beginning to use webcasts and interactive Internet sessions to broaden the audience attending public meetings.

After the comment period closes, an agency may establish a second period for reply comments (comments that respond to prior comments). A reply period is not required by law. The reply comment period enables people to respond to comments that agencies received at the end of comment period, creating more of a public dialog.

How do public comments affect the final rule?

The notice‐and‐comment process enables anyone to submit a comment on any part of the proposed rule. This process is not like a ballot initiative or an up‐or‐down vote in a legislature. An agency is not permitted to base its final rule on the number of comments in support of the rule over those in opposition to it. At the end of the process, the agency must base its reasoning and conclusions on the rulemaking record, consisting of the comments, scientific data, expert opinions, and facts accumulated during the pre‐rule and proposed rule stages.

To move forward with a final rule, the agency must conclude that its proposed solution will help accomplish the goals or solve the problems identified. It must also consider whether alternate solutions would be more effective or cost less.

If the rulemaking record contains persuasive new data or policy arguments, or poses difficult questions or criticisms, the agency may decide to terminate the rulemaking. Or, the agency may decide to continue the rulemaking but change aspects of the rule to reflect these new issues. If the changes are major, the agency may publish a supplemental proposed rule. If the changes are minor, or a logical outgrowth of the issues and solutions discussed in the proposed rules, the agency may proceed with a final rule.

How is the final rule structured?

Final rules also have preambles, including the summary, effective date, and supplementary information. The final rule published in the Federal Register begins with a “Summary” of the societal problems and regulatory goals and explains why the rule is necessary.

Every final rule must have an “Effective Date.” However, any portions that are subject to later approval under the Paperwork Reduction Act or are subject to Congressional approval may be excepted from that effective date. The “Dates” caption in the Federal Register may also contain compliance or applicability dates.

The agency must state the “basis and purpose” of the rule in the “Supplementary Information” part of the preamble. This statement sets out the goals or problems the rule addresses, describes the facts and data the agency relies on, responds to major criticisms in the proposed rule comments, and explains why the agency did not choose other alternatives.

The agency must identify its legal authority for issuing the rule and publish the regulatory text in full. The regulatory text sets out amendments to the Code of Federal Regulations (CFR). Each amendment begins with instructions for changing the CFR.

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Despite the promise of public involvement in federal rulemaking, there has not been any inclination on the part of the President or the majority in Congress to solicit opinions or advice from the general public, or even from people directly affected by proposed changes in healthcare policy. It is hard to tell where all this leading. The best advice is to Expect the Unexpected.

Update on Health Care/Medicaid votes in the U.S. Senate

From the national ARC news letter, Capitol Hill Insider for the week of July 24th, 2017:

Health Care/Medicaid - Senate Vote on Health Care Repeal Planned for This Week

The Senate continues to try and move forward on a plan to repeal the Affordable Care Act (ACA). On July 17, plans to repeal the ACA and cap Medicaid were put on hold when four Republican Senators announced their intent to vote "no" on a motion to begin debate. The next morning, Senate Majority Leader Mitch McConnell (R-KY) announced that there would be a vote on Obamacare Repeal Reconciliation Act (ORRA), which does not include Medicaid per capita caps, but does repeal Medicaid expansion, the increased federal match for the Community First Choice option, the individual and employer mandates, the premium tax credits, and a number of other provisions. The bill would not take effect for two years, giving Congress time to develop a replacement. However, it is unclear whether insurers will continue to participate in the market when the long-term framework is unknown. Within hours of this announcement, three Republican Senators announced their opposition to voting to repeal and delay replacement with a new plan.

Senate Majority Leader McConnell then announced that there will be a vote on a motion to begin debate early this week. It is unclear whether the vote will be on the ORRA or a revised Better Care Reconciliation Act (BCRA). The Senate is also considering revising BCRA to includes $200 billion in non-Medicaid funds for expansion states in an effort to win support from Senators from the Medicaid expansion states. The Congressional Budget Office has evaluated the ORRA and BCRA and found that they will increase the number of uninsured Americans by 32 million and 22 million, respectively.

To further complicate the situation, the Senate Parliamentarian, who must review provisions to make sure they comply with the Senate rules, has found that several provisions could be challenged and would require 60 votes to keep them in the bill. The provisions include a prohibition of Planned Parenthood funding, ending the essential health benefits requirement in Medicaid, continuing funding for cost sharing subsidies, allowing states to change the requirement that plans spend at least 80% of premium income on health care, and the six- month waiting period prior to enrollment without continuous coverage. The Parliamentarian continues to review the bill and may issue additional findings. It is unclear if the Senate has the votes to pass any legislation at this point, but the leadership is expected to keep working to try and find agreement on repealing the ACA.

Is this any way to reform health care?

The U.S. Senate has taken up consideration of a hugely unpopular House bill to repeal and reform Obamacare. Senate leadership plans to hold a vote on the Senate version of the bill by Friday, June 30, 2017. No debate, no hearings, no amendments. And you won't have time enough to read and understand the bill to know how it will affect you and your DD family member. Here is an Action Alert from ACCSES:

June 20, 2017 

ACTION ALERT

Senate Vote on Health Care 

This Action Alert Requires Your Immediate Action!

The Senate health care bill is expected to come to the floor for a vote by next Friday, June 30, with NO debate, NO amendments, and NO committee hearings. While no one has seen the bill, which is being drafted under the guidance of just 13 Republican Senators, it is believed to include cuts to Medicaid spending that are even more extreme than the House-passed American Health Care Act.

We are at the critical stage. It is on all of us to push back and demand that the Senate do its job in the daylight and reject any health care bill that has not been fully vetted. Reach out to your Senator(s) and tell them to vote NO.

Go to the ACCSES Action Center now! Call your Senators’ offices. E-mail them. This is serious.

Kind regards,

Kate McSweeny
Vice President of Government Affairs &
General Counsel
ACCSES

The GOP race to advance repeal-and-replace of Obamacare by July 4th, 2017

If you thought the Republican plan to repeal-and-replace Obamacare was dead on arrival in the U.S. Senate, think again. The House of Representatives passed an extremely harsh and unpopular bill last May that has been heavily criticized. Nevertheless, Senate plans to usher through healthcare reform are underway.

According to Politico, “McConnell whips Senate GOP back in line in Obamacare repeal” by Burgess Everett, Jennifer Haberkorn, and Adam Cancryn, 6/6/2017, Republicans have emerged from meetings this week with increasing optimism that they can pass a bill by the end of June, before the July 4th recess. If and when it is voted on, you may not know what is in it and there will be no public hearings on the bill. There is no legislation written yet for you to look at, but McConnell (R-KY) says that “failure is not an option”. 

Or as Senator Pat Roberts (R-Kan.) puts it,

“We’re in the back seat with Thelma and Louise and we need to get out of the car. So details matter, but we need to get out of the car. That was the pre-eminent message…The upshot is: This has to happen.”

What will happen? No one can say exactly, but here is what might happen:

“Senate Republicans expect their bill to be more generous than the House-passed measure in almost every way: A longer runway for ending the Medicaid expansion, more money for insurance market stabilization to lower premiums and beefed up tax credits for Americans of lower income, senators said. But no decisions have been made on some key policy questions, including on handling Medicaid. Still, it’s almost impossible for the public to assess what precisely Republicans are working on — the GOP is writing the bill behind closed doors and with no committee hearings.” [emphasis added]

If a bill is passed, it will have to be done through Reconciliation. According to the Tax Policy Center, “Congressional budget committees use the reconciliation process to ensure tax laws and mandatory spending programs are revised according to the budget resolution’s revenue and spending targets. The reconciliation process is a way to fast-track revenue and spending legislation into becoming law.” For a fuller explanation, see this from the Tax Policy Center.

The bill will have to go through a number of steps described in the article, though none of them include hearings or sober consideration of a huge change to our health care system with multiple effects on our economy and health.

Who will hear the voices of people with DD and their families above the noise of the health care debate?

The following is a letter to the editor that comes by way of the VOR Weekly Update for May 26, 2017.

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The Herald Sun (Durham, NC) 

May 25, 2017
Letter to the Editor, 

As debate surrounding the American Health Care Act (AHCA) continues in the commotion of Washington and the clamor of local town hall meetings, it becomes apparent that even in the midst of profound disagreement, all can agree that the proper way to garner support is by speaking the loudest. In such an economy of noise, however, what happens to those whose voices fail to gain an ear?

Individuals with intellectual and developmental disabilities (I/DD) have traditionally struggled to be heard in national health policy conversations. And amidst the din of the current debate surrounding pre-existing conditions and insurance premiums, discussion of the potential damage to the I/DD community that would be wrought by the AHCA’s congressional approval has gone relatively unheard.

The significant proposed cuts to Medicaid would jeopardize access to basic healthcare services for the I/DD community, many of whom have significant physical conditions in addition to intellectual impairments. Funding for caregivers would likewise be slashed, threatening access to both home care and social programming crucial to the physical and emotional well-being of those with I/DD. Special education funding in public schools could also be dramatically reduced, subverting the attempt to provide early and effective educational opportunities that allow these individuals to lead healthier and vocationally meaningful lives. 

Regardless of readers’ political inclinations, it is important that all at least hear this message and consider the implications of the proposed AHCA on the I/DD community, whose voices demand attention even (and especially) when they seem lost in the noise.

Ben Frush

Chapel Hill, North Carolina

The Health Care Debate and People with DD

The news on proposals to "Repeal and Replace" the Affordable Care Act (Obamacare) have been disturbing, to say the least. Potentially radical changes to Medicaid and eventually Medicare, the availability of health insurance, and how it will be paid for are being rushed through Congress apparently without due consideration for the effects on our most vulnerable populations, including those with intellectual and developmental disabilities. 

Couple that with a windstorm that swept across Michigan and knocked out electrical power to 800,000 customers in Southeast Michigan where I live, and you can imagine how difficult it has been for me to know where to start in making sense of either crisis . The best commentary I have read on the health care debate comes from the VOR Weekly News Update for March 10th, 2017:

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VOR and YOU: Health Care

Much has been said about the recent "Repeal and Replace" activities in Congress. VOR is very concerned about this as well. We have people on both sides of the aisle, and we try not to let our personal views on some issues get in the way of the issues that we have in common, the best interests of our loved ones with I/DD. We all know that the system that preceded the ACA was untenable. We all agree that there are problems with the ACA. but that some aspects of the act should be preserved. We may also agree that the current process of replacing the ACA with the AHCA has not been a smooth or reassuring one.

So what do we know? What can we agree on? 

To begin, we know that there is not enough money to properly deal with the needs of everyone with an intellectual or developmental disability. There are people on waiting lists, many of whom have been on these lists for over a decade. We have people who are receiving services that fall short of their needs. As a result, we do not have a unified community, but one in which each of us is trying to protect what we have or else trying to get what we can by taking from someone else. There is not enough to go around, yet neither party is proposing increasing the amount of money to be spent on the I/DD population.

Second, we see that not enough money is spent to provide long-term caregivers a living wage. As the minimum wage rises for many workers, many direct-care professionals are being left behind. We need to make sure that we have a well-trained, responsible, and loving workforce to look after the needs of individuals with I/DD. We can only maintain such a workforce by giving them wages that are fair compensation for the services they provide.

Third, we know that a good portion of the money that is in the CMS [Centers for Medicare and Medicaid Services] budget goes is being misspent.We believe that the best way to spend this money is make sure it goes directly to care and related services. Far too much of it goes to agencies and programs that lobby against others in the community, to P&A's and DD Councils that often spend these funds working against the interests of some in order to promote ideologies of integration and one-size-fits-all solutions that completely ignore the needs of many of the most severely disabled.

Finally, we know that choice is important to people with I/DD and their families and guardians. We believe that the I/DD population is diverse, and that their needs are too diverse to be met by any simple solutions. Our loved ones are individuals. No two are alike, and while some have similar problems, they don't always react the same to any one given treatment. We believe that residential choice in all forms is vital and we believe that individuals need a variety of employment options, that competitive, integrated employment, sheltered workshops, day programs, and farmsteads are all vital parts of a healthful and productive occupational platform. And we know that with choice comes responsibility - the responsibility to maintain each facility or program to maximize its efficiency and effectiveness, while providing a safe, comforting environment to the individual.

There are no easy solutions being proposed that would solve our health care crisis. We have a complex and underfunded system, and there will always be some people who gain and some who lose. Whatever comes in the months ahead, we know that we must continue to speak up for the needs of the I/DD community, to emphasize the true meaning of Olmstead, and to find political leaders who are willing to help us in our cause.

Another trip to the the ER with plenty of time for thoughtful reflection

Another day in the Emergency Room with Danny. Ho hum. What are you gonna do?

Three days ago, Danny threw up what appeared to be blood, so off he went to the Emergency Room at our local world-famous medical facility. When you need expert medical advice and specialized care, it is a fabulous institution. And it is an “institution” in the best and worst sense that the word is commonly understood. But the ER on a Monday afternoon can be a horror show.

Danny arrived at the ER with a staff person from the group home. I got there a couple of hours later and the place was jam-packed. There were sick people everywhere and ambulances pulled up every ten minutes or so with patients who had priority over the people who arrived there on their own. We waited and waited, but there was very little progress for people waiting to be seen by a doctor. The only thing that was happening was that a lot of people were called in to have their blood drawn and then were disgorged back again into the waiting room.

After I had been there for an hour or so, a man sitting in the crowd keeled over. He was having a terrible time breathing and he threw up on the floor. By this time the waiting room had become a small community of groaners, complainers, and the worried well. When the man hit the floor we were admonished by another ill and miserable person to pray for the man on the floor. I prayed that he would be removed as quickly as possible and given some help with his breathing. The ER team swooped in with a stretcher to take him into the inner sanctum.  

As the hours went by, someone saw the man who keeled over walk by in the hallway. As someone announced to the group that the man was OK, we heaved a collective sigh of relief.

At one point, about six people decided they would rather die at home than in the ER; they rose as one and left. Our small community had shrunk but we were now, on average, sicker and more pathetic than before. Danny suddenly had a desperate need to have his brief changed, so we were allowed to come into the inner chambers to occupy the smallest space possible to get him taken care of. An older woman who had waited about 9 hours was finally wheeled in to see a doctor. She waved to the crowd. We waved back and wished her well. At about 10 pm Danny officially entered into the care of the ER where he would remain until 7 the next morning when a hospital room was finally available for him to be admitted. 

There is much to be said about his hospitalization, but for now, it is enough to say that Danny will be OK and will soon go back to his group home.

A Crowded ER - Not Just a Local Problem
 
Sitting around in the hospital room, I discovered that the problem of overcrowded emergency rooms was not confined to my own sprawling medical facility. In an editorial in the New York Times for 5/6/15, Ezekiel J. Emanuel wrote on the subject, “How to Solve the E.R. Problem”.

He explains that one of the selling points of health care reform (Obamacare) was that by expanding insurance coverage, the unnecessary use of emergency rooms would decrease as preventive care became more available. It turns out that increasing insurance coverage alone was not sufficient to reduce the overuse of emergency rooms. In fact, the opposite has been true: major surveys have shown substantial increases in ER use, probably because newly insured people no longer have a co-pay for ER use.

Emanuel finds hope, however, in a Seattle partnership:  “…Group Health Cooperative of Puget Sound, a nonprofit that provides health care and insurance, and SEIU Healthcare NW Health Benefits Trust, which delivers health benefits to thousands of home health care workers, have reduced emergency room use among a subset of the trust’s membership by 27 percent over four years.”

The partnership's approach is this: “First, it offers a $100 cash incentive if workers complete four steps. The steps evolve each year but have included signing up for MyGroupHealth, an online platform where workers can email doctors, order prescriptions, and access health information and self-help resources; completing a 'health risk assessment,' a tool commonly used in corporate wellness programs; and completing preventive primary care and dental appointments.” Then it raised the co-pay for an ER visit to $200, a strong disincentive to use the ER if you have an alternative.

If you read the article, look at the comments, also. They provide an interesting critique of Emanuel's editorial.

MI Mental Health System, Including Services to DD, Severely Impacted by Funding Cuts

At the last Washtenaw Community Health Organization Board meeting on 4/22/15, a packet of news articles about statewide problems with budget deficits and service cuts was distributed. These articles date from January 2014 to the present. Washtenaw County is its own special case, as the WCHO goes through a change from a "Community Health Organization" to a "Community Mental Health Agency" while also dealing with a $3.8million budget deficit. (More on Washtenaw County later). 

The problems with state funding of Community Mental Health (CMH) services, including services to the developmentally disabled population, are complex. I am no expert on Mental health funding and it is likely that my take on it is not entirely correct, but this is what I think has happened based on news articles:

• Michigan's Medicaid expansion (Healthy Michigan) began enrolling participants in April of 2014; 
• The State expected a large influx of federal funds to pay for health care to eligible citizens through Medicaid expansion and on that basis made large cuts to  state Medicaid funding and to non-Medicaid General Funds that local agencies use to fill in the gaps for people not in the Medicaid system. 
• The State also adjusted payments to counties to make funding more evenly consistent throughout the state, resulting in some counties receiving more Medicaid funding and some less than before. 
• Large increases in people insured by Healthy Michigan and decreases in numbers insured by "regular" Medicaid have resulted in less funding for regular Medicaid mental health services, at the same time that the numbers served by the CMH system have increased. (Apparently, the two Medicaid systems are funded separately). 
• The Governor's desire to use the increased Medicaid funding from the federal government as savings for future costs to the State, has made less money available to pay for current services. 
• The legislature's expectation of increased federal funding to cover current and future costs was overly optimistic.

News Articles on State-wide Stresses on the Michigan CMH system
 
"Cuts likely necessary for Oakland’s Mental Health Authority, with $11M deficit", 4/7/15: $11million deficit...cuts to providers, programs, and layoffs likely…$14million reduction in Medicaid dollars from the state….some providers could go out of business…worst-case scenario - more cuts in 2016 fiscal year.
 
Kent County’s Community Mental Health authority Network 180 press release [no link available], 4/8/15: Board votes to implement agency-wide cuts…salary cuts…”adults with DD will see a dramatic reduction in daily support and services immediately”…new lower Medicaid rates in West Michigan to increase rates in other parts of the state…affected by unexpected drop in traditional Medicaid enrollment with introduction of Healthy Michigan (Medicaid expansion).

“Cuts threaten services for Oakland Co. disabled” 9/24/14: 2014-15 budget includes $20million in state aid cuts to general fund and $14million in cuts from Medicaid…Changes under the Affordable Health Care Act - “Michigan opened Medicaid to nearly 500,000 additional residents and moved their health care costs—including mental health care costs —off the state’s books and on to federal rolls”…..In anticipation of savings, state trimmed $75million from mental health spending for 2014-15 fiscal year…some cuts offset by federal dollars…number of people served by Michigan’s CMH system climbed from 184,708 in 2004 to 248,189 last year [2013]…

“Funding cuts send hundreds of mentally ill onto Detroit’s streets” 5/1/14: Detroit’s longtime round-the-clock homeless shelter turns out hundreds of people…no place to go…when state lawmakers passed Medicaid expansion, an infusion of federal funds was expected to make up for cuts based on anticipated savings…general fund dollars also cut…CEO of Detroit CMH on state plan: “It’s like, next month you need to pay the mortgage, and the state says, ‘Well your grandmother may die in the next six months and leave you the money.'”

“Local mental health programs face cuts” from Northern Lakes Community Mental Health Blog, 4/3/14 : “Community mental health groups across the state began to lose roughly 54 percent of their state-funded general purpose money on Tuesday, the same day enrollment in the Healthy Michigan Plan opened.” [General fund dollars, as opposed to Medicaid dollars serve people who do not qualify for Medicaid but nevertheless have needs served by the mental health system such as children, people on Medicare, and many people who are mentally ill.]

“Adult Foster Care Aid May be at Risk, Advocates Say” 5/30/14 from Kaiser Health News/Detroit News: “As part of major changes associated with the health care overhaul, also known as Obamacare, Michigan opened Medicaid to nearly 500,000 additional residents. That moves their health care costs — including mental health — off the state’s books and onto the federal government’s.”…state trimmed mental health spending for the current fiscal year [2013-14]by $75 million, Snyder wants to trim more…”The state’s not going to save as much as they think they are.”…Gov. wants most of the annual savings to cover future Medicaid costs…

“Michigan community mental health centers turning away patients, blame ‘flaw’ in Medicaid expansion” from mlive.com, 4/22/14 :  “Local mental health officials say Gov. Rick Snyder's administration overestimated the savings from Healthy Michigan [Michigan's Medicaid expansion], resulting in a funding shortfall for CMH boards across the state.”…”While overall funding has increased, CMH programs are still left with funding gaps because the Healthy Michigan dollars can't be used to fund services for those who don't have Healthy Michigan coverage.”…”Vizena [from the association of CMH Boards] said he had hoped the state would have done a better job to make sure there wasn't a time gap between losing the general fund money and getting an influx of money through new Healthy Michigan enrollees”.
 
“Macomb, St. Clair County CMH cut services” 4/29/14: “Macomb County CMH is cutting services to about 1,350 people. St. Clair County Community Mental Health is cutting services to approximately 300 people. Sanilac County CMH is cutting services to about 90 people.”…St. Clair County uses the general fund money to cover people on Medicare...Medicare covers only about 80 percent of the cost of mental health services, the rest of which the CMH covers with general fund monies….general funds help cover “spend downs”, deductibles before insurance kicks in….
 
“Proposed mental health funding cuts could hurt Jackson’s uninsured, mentally ill population” from mlivd.com, 1/6/14: Maribeth Leonard, the CEO of Jackson County's mental health agency LifeWays - legislators are assuming too much under the expansion…In 2013, LifeWays served 2,780 patients who were uninsured or not covered under Medicaid with general fund dollars…

Navigating Health Care Reform

Prickly Hearts

We are fortunate in not having to deal with changing health insurance. Our sons have been covered by Medicaid since they were 18 years old in a Medicaid friendly part of Michigan. Medicaid also pays for the services they need as developmentally disabled adults. Medicaid expansion should help more children and adults with disabilities qualify for mental health services if they have mental illness or  DD.

Last Sunday, 3/23/14, The Detroit Free Press published a whole section on navigating health care reform with about 50 links to articles on just about every topic concerning the Affordable Care Act and obtaining health insurance you could imagine. Here is the introduction to the On-Line version of the DFP's special health care section:

Are you ready?
 
The most contentious piece of federal health reform legislation – a requirement that every person have health insurance by next year or face tax penalties – has begun. It is officially named the Patient Protection and Affordable Care Act, although some groups refer to the legislation as just the Affordable Care Act, ACA or "Obamacare." The enrollment period began October 1 and runs through March 31. Many Michigan residents will be able to buy insurance through the Michigan Health Insurance Marketplace, an online exchange where the coverage may be more affordable. If you have questions, let us know and we'll try to find answers. Write: healthreform@freepress.com.

Good luck to those who have not yet signed up for a workable health insurance policy.

Kansas poised to turn over DD services to for-profit health plans

This is from an article in Kaiser Health News posted on 12/5/13 called  "In Kansas, A Fight Over Developmentally Disabled Shifting To Medicaid Managed Care" by Jenni Bergal. According to the article, Kansas is poised to hand over all home and community-based services for 8,500 people with developmental disabilities to three for-profit Medicaid managed health plans on January 1, 2014:

"…What concerns families and advocates the most is that the three for-profit national insurance companies that run KanCare [the program through which the State of Kansas administers Medicaid] will be responsible for a statewide program that they’ve never managed in Kansas or elsewhere. They’re also worried that the need to make a profit ultimately will destroy a system families and advocates think works well.

"While Kansas will become the first state to make such a leap, it is being watched closely elsewhere, as at least two other states – Louisiana and New Hampshire – are considering moving in the same direction.

“'This is an unprecedented model. No state has ever taken a developmental disability population and placed it in an arrangement like this, with an out-of-state managed care system, all at once,' said Rocky Nichols, executive director of the Disability Rights Center of Kansas, a legal advocacy group. 'It’s almost like throwing everyone into the deep end of the pool.'"
 
Families believe the current system is working well and wonder why the state would take such risks with their DD family members:

"In Kansas, where a network of community-based nonprofit organizations and county agencies oversee these services, individuals can choose a case manager, who visits them at home and coordinates their care. In some cases, those relationships go back decades. While these organizations will continue to determine what services clients are eligible for and case managers will work with families to arrange that care, ultimately the health plans will be responsible.

“'There is a great deal of fear in the community that these big private health plans don’t know much about this population,' said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for the developmentally disabled. 'These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.'

"Only a handful of states, including Michigan and Vermont, have moved the developmentally disabled into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None has turned exclusively to national managed care companies."

The health plans currently manage the medical care for people with developmental disabilities, but not the non-medical care and social services that so many rely on.

The article continues:

"[Governor] Brownback, a Republican, has said that KanCare will improve care coordination and reduce growth in Medicaid spending for the state and federal government by $1 billion over five years.

"Although the frail elderly, physically disabled and mentally ill are now getting long-term services through KanCare, inclusion of the developmentally disabled was delayed until 2014 by the legislature following bitter protests from parents, advocates and providers. Lawmakers wouldn’t yield again, even as more than 1,000 people rallied outside the Capitol in Topeka in May, many wearing red T-shirts that read: 'Not Worth the Gamble.'"

The state says that nervous providers have gotten families unnecessarily riled up about the plan, and has assured them that services won't be cut. 

"…But many are skeptical. They fear that the managed care companies will seek to boost profits by reducing services or driving some small providers out of business because of payment delays or denials. The companies say these concerns are unfounded and insist that services will be maintained and providers paid promptly."

This is certainly a situation that warrants watching. Kansas is going to turn over the management of home and community-based services for people with developmental disabilities to for-profit health plans that have no experience serving this population but are very good at making money. What could possibly go wrong?

Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics.

Kaiser Health News: "States Balk At Terminating Medicaid Contracts"

Kaiser Health News is an excellent source of information on health care and health care reform. See About KHN.

This article, from Kaiser Health News is about states that can't seem to separate themselves from Medicaid contractors that have defrauded them, misused Medicaid funds, and otherwise failed to meet their obligations under contracts with state Medicaid agencies.  

Most states give the excuse that they do not want to disrupt care to Medicaid recipients by abruptly canceling contracts with health plans. The hesitancy of states to cancel contracts or otherwise penalize contractors for abuses may have more to do with the relative powerlessness of Medicaid recipients (who are poor, disabled, and elderly) who bear the brunt of poor quality or unavailable services and the relatively powerful health plans and their political clout with state decision makers.

Here are some excerpts from the article at KHN:

"In Florida, a national managed care company’s former top executives were convicted in a scheme to rip off Medicaid. In Illinois, a state official concluded two Medicaid plans were providing 'abysmal' care. In Ohio, a nonprofit paid millions to settle civil fraud allegations that it failed to screen children with special needs and faked data.

"Despite these problems, state health agencies in these — and other states — continued to contract with the plans to provide services to patients on Medicaid, the federal-state program for the poor and disabled."
...
"States are increasingly turning to insurance companies to provide coverage for people on Medicaid in hopes of saving money and improving care. About 30 million Americans on Medicaid now belong to a managed care plan, and beginning in January, millions more will become eligible under the federal health law. Many will be placed in managed care.
 
"Thirty-six states and the District of Columbia have enrolled some or all of their Medicaid population in private health plans, many of them owned by major insurers that operate in multiple states."
… 
"Advocates say that states need to do a better job of policing problem plans and not wait until a contract is up for renewal to pull the plug.

"'You have a situation where too many states take a hands-off approach. I think there’s a significant risk of substantial harm to consumers,' said Alice Dembner, project director for Community Catalyst, a national health care consumer advocacy group.

"Dembner’s group is surveying states to find out if — and how — they sanction managed care plans, focusing on companies that operate in multiple states.

"'So far, we found that only a small number of states impose fines and many of them are for paperwork violations — the plans didn’t file this form or that form on time,' Dembner said, noting that just a handful of states have levied sizeable penalties." 

Texas

"Linda Edwards Gockel, spokeswoman for the Texas Health and Human Services Commission, said that in 2009, officials were concerned about a pilot program in the Dallas-Fort Worth area run by Evercare, a subsidiary of UnitedHealth Group. The program, which coordinated care and long-term services for the elderly and people with disabilities, had been fined more than $600,000 for not providing proper access to care and failing to coordinate services.

"Gockel said Texas decided to cancel the contract 15 months early, but continued to do business with Evercare because the problems in Dallas-Fort Worth weren’t affecting services it was providing elsewhere."

Illinois

"In Illinois, Medicaid Deputy Administrator Jim Parker said his office was unable to cut ties with Harmony Health Plan, a subsidiary of WellCare Health Plans, and Family Health Network, a nonprofit community plan, even though they had serious quality problems over a decade.

"'Their performance was abysmal,' Parker said, noting that their quality rankings were in the low percentiles.

"Parker said one reason the state kept awarding them contracts was that they agreed to participate in a program in several counties in which members enrolled voluntarily and weren’t required to join. Most companies weren’t interested in that business because there wasn’t a guaranteed number of patients.

"The other reason was more complex.

"'Managed care can be a big political issue at the state level,' Parker said. 'You had a divide in Illinois. Republicans in the legislature were pushing the state to go to more managed care. In light of that, it was not politically feasible to get rid of the existing plans. They were around for political reasons.'"

Ohio

"CareSource, a Dayton, Ohio-based nonprofit Medicaid plan, agreed in 2011 to pay the federal government and the state $26 million to settle civil fraud allegations that it failed to provide screenings and other services for adults and children with special needs and submitted false data to the state. The company denied the allegations, but said it settled to bring the matter to a close.

"CareSource spokeswoman Jenny Michael said the company had no comment.
 
"Ohio Medicaid spokesman Sam Rossi wrote in an email that the settlement 'did not include any actual finding of wrongdoing, and there was never an allegation of consumer harm.' He said CareSource has taken steps in recent years 'to better document the services it provides.'

"CareSource remains Ohio’s largest Medicaid managed care plan."

Health plans operating in multiple states

"Another plan that faced fraud allegations was Amerigroup Corp. of Virginia Beach, a national managed care company that currently operates in 12 states. It agreed in 2008 to pay $225 million to the federal government and Illinois to settle a civil case that alleged it had defrauded the state’s Medicaid program because it avoided enrolling pregnant women and unhealthy patients and submitted thousands of false claims to the government. The company did not admit any wrongdoing.

"Amerigroup, which was purchased by WellPoint in late 2012, had already left Illinois when its contract expired two years before the settlement. The other states did not rescind their contracts."
...
"Health care fraud experts said they couldn’t think of a single case in recent years in which a plan had been dropped because it was the subject of a Medicaid fraud probe." [emphasis added]

Florida

"Florida health officials continued to contract with WellCare after FBI agents raided the national managed care company’s Tampa headquarters in 2007. That eventually led to criminal charges, and earlier this year, several former WellCare top executives were convicted in a scheme to defraud Florida’s Medicaid and Healthy Kids programs by falsely inflating the amount it spent on care.

"In 2009, WellCare signed a 'deferred prosecution agreement' with the U.S. Attorney’s Office, agreeing to pay $80 million to resolve potential criminal charges in the fraud case. Last year, the company finalized a $137 million settlement to resolve civil fraud allegations. It did not admit wrongdoing in the civil case.

"In February, Florida officials allowed the company to expand its Medicaid services to all 67 counties. Today, WellCare, which has 1.8 million Medicaid members in eight states, is the largest Medicaid managed care plan in Florida."

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FYI: Michigan Medicaid Managed Care Health Plans

Affordable Care Act : Michigan health plans and coverage for special needs children

This is from the Detroit Free Press, 9/12/13, on "What Michigan health plans must offer" under the Affordable Care Act: 

• Ambulatory patient services.
• Outpatient care that includes visits to primary care doctors, home health care services and hospice care, though some carriers might limit this to no more than 45 days.Emergency service.
• Visits to the emergency room and ambulance transportation.Hospitalization.
• Surgeries, transplants and care in a skilled nursing facility, though some carriers may limit the latter to no more than 45 days.Maternity and newborn care: Prenatal care, delivery and postnatal care.
• Inpatient and outpatient mental health and substance abuse services: Some carriers may limit this to 20 days each per year.
• Prescription drugs: Includes commonly prescribed drugs and specialty drugs, a class known for its extraordinary high cost per dosage.
• Rehabilitative and habilitative services and devices: Allows 30 visits per year for physical therapy, occupational therapy or chiropractor services, 30 visits for speech therapy and 30 visits for cardiac or pulmonary rehab.
• Laboratory services: X-rays, CT scans and breast cancer diagnosis tests.
• Preventive and wellness services: Chronic disease management and immunizations.
• Pediatric services: Oral and vision care and more.

[Source: Detroit Free Press research]

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For special needs children, the Catalyst Center has published a document called "The Affordable Care Act - A side-by-side comparison of major provisions and the implications for children and youth with special health care needs from the Catalyst Center". The center is "a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN)". This publication gives a detailed description of what is required by the ACA, the provisions that are already in effect, soon to be implemented provisions, and the implications for children with special needs.

Michigan expands Medicaid to low-income people

Troika

Here two detailed articles from the Detroit Free Press on the vote by the Michigan Senate to expand Medicaid to cover people earning up to 133% of the poverty level. The first article, "Medicaid expansion passes after heated politicking; 470,000 more Michiganders to get coverage", 8/27/13, covers the nitty gritty and sometimes unseemly wheeling and dealing that it took to get the bill passed. The second article, "Delay in Medicaid expansion to be costly" deals with the consequences of the failure to get a two-thirds majority of the Senate to agree that the bill should take immediate effect. Both articles are by Kathleen Gray from the Detroit Free Press Lansing Bureau.

The passage of Medicaid expansion allows the state to take advantage of extra federal funding available under the Affordable Care Act to cover low-income people. Although the Michigan Senate voted to approve Medicaid expansion, there's a catch. The bill will not take effect until April 1, 2014. This could change after the Michigan legislature comes back in September, if two-thirds of the Senate can agree that it should take effect immediately (meaning on January 1, 2014). If the the legislature fails to pass the bill by a two-thirds majority, the state will have to forgo an estimated $7 million per day in federal funds that would have covered health care for this low-income population.

The effect of Medicaid expansion on adults with developmental disabilities will not be as great as the effect on people with mental illness, although low-income families with disabled children would be likely to benefit from Medicaid expansion. The vast majority of adults with developmental disabilities already meet the eligibility criteria for Medicaid, but many people with mental illness who can work, at least sporadically, have a harder time qualifying. Medicaid expansion will provide Medicaid to mentally ill people who meet the income criteria and also make them eligible for Medicaid-funded mental health services. It should also have a significant impact on low-wage caregivers who do not currently have health insurance.

One reason the bill won enough Republican support to pass was offered by State Senator Kahn: “This bill is about reform. It is a national model,” Kahn said. “The taxes in the Affordable Care Act are billions of dollars. And for us in Michigan, it will be $2 billion siphoned from our people, and we’re going to bring that back to the state.” 

Here is addtional information on Medicaid expansion, according to the Detroit Free Press:

• Federally-funded Medicaid expansion will cover 320,000 low-income Michiganders next year and 470,000 people by 2020.
• "The bill requires the additional recipients [of Medicaid] to contribute 5% of their out-of-pocket medical costs. After 48 months, that co-pay would increase to 7% or the recipient could purchase insurance on the health care exchange...if a person who falls in that poverty level is determined to be “medically frail” — either with a chronic disease, mental illness or are unable to complete the daily tasks of life — they would remain at the 5% co-pay."
• The federal government will have to grant waivers to Michigan for two of the provisions of the bill, the creation of health savings accounts for Medicaid recipients and language that allows recipients to choose between a health care exchange or Medicaid benefits after 48 months. 
• The Medicaid expansion will be fully paid for by the federal government through 2017. The federal contribution would drop to 90% by 2020.

Michigan Medicaid Reform Proposals before the State Senate

This is from the August 2013 newsletter, The Advocate, from The Area Agency on Aging 1-B. AAA 1-B is a nonprofit agency serving the needs of older adults in Livingston, Macomb, Monroe, Oakland, St. Clair, and Washtenaw counties. 

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Three Medicaid Reform Proposals Move to Full Senate for Consideration, Vote Likely in Early September  

On July 24th, the Senate Medicaid workgroup convened by Majority Leader Randy Richardville (R-Monroe) and led by Senator Roger Kahn, M.D. reported three Medicaid reform proposals; HB 4714 as passed by the House on June 13 with minor changes, SB 422 (Caswell) known as the Michigan Low-Income Health Plan Act, and Senate Bills 459 and 460 (Colbeck) known collectively as the Patient-Centered Care Act. All three bills were sent to the Senate Government Operations Committee and were voted out of committee on July 31st to be sent to the Senate for full consideration, debate and a likely vote will happen in early September.

The decision to move all three Medicaid proposals out of committee for a full senate vote was made by Senate Leader and Government Operations Committee Chair Randy Richardville citing that all three bills have their own merits. Supporters of HB 4714 worry the additional proposals may strip potential votes in favor of SB 422, or 459 and 460.

HB 4714 (S-7): The Healthy Michigan Plan reforms Medicaid to cover individuals with incomes up to 133% of the federal poverty level for up to 48 months with a requirement that the newly insured would pay no more than 5% of their out-of-pocket medical expenses. Following the 48 month period, the newly insured could then remain on Medicaid with an increase in their copayments up to 7% or they could choose to purchase health coverage through the Federal Health Care Exchange.
 
SB 422: The Michigan Low-Income Health Plan Act would essentially create a state funded alternative to Medicaid. The Act would provide tax credits to those between 133% and 100% of Federal Poverty Level (FPL) to enable the purchase of insurance on the healthcare exchange established by the Affordable Care Act. This bill establishes a Michigan Low-Income Health Plan which would provide health coverage to persons who meet the following criteria; Not eligible for Medicare, Medicaid, or MIChild; Household in-come under 100% of FPL; Under age 65; Not eligible for veterans health benefits; and have no other health insurance coverage.

SB 459, 460: The Patient-Centered Care Act would require the state to license private health exchanges, create the Low-Income Trust Fund, and “migrate” Medicaid recipients to individual health savings accounts from which they could purchase a qualified health plan. The Low-Income Trust Fund would be used to fund the deductibles of former Medicaid or MIChild recipients until the balance of their health savings account is adequate to pay their deductibles.

HB 4714 S-7 closely mirrors the version passed by the house in June and is likely to draw the majority of bipartisan support. Both alternative plans SB 422 and SB 459, 460 are receiving criticism as too costly to the State’s general fund, or as unfeasible given the knowledge and personnel requirements needed to administer the program.

Contact your Senator to share your opinion on reforming Medicaid in Michigan

Rules limiting choice for Home and Community Based Services [CMS-2249-P2] still pending

Bambi times two

Controversial rules [CMS-2249-P2] proposed by the Centers for Medicare and Medicaid Services last year, would restrict funding for Home and Community Based Services for people with developmental and other disabilities to settings defined arbitrarily by CMS as sufficiently in the "community". These rules are still pending. They have not yet been approved and implemented.

What's this all about?

The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicaid. Medicaid Home and  Community Based Services (HCBS) are funded under a variety of waivers - in Michigan, the Habilitation Supports Waiver (HSW) is targeted to fund services for people with developmental disabilities. Other services more generally available to people served by the mental health system in Michigan are provided under a State Plan approved by CMS. State Plan services cover most services under the HSW with a few exceptions. The proposed rules, CMS-2249-P2, are intended to apply standards for Home and Community Based Services uniformly for state plan and waiver services.

The most controversial and potentially disruptive part of the proposed rules are the standards that they set for "community settings" where Home and Community Based Services are provided. Under Medicaid law governing HCBS there is an explicit prohibition against using HCBS funding in institutional settings - nursing facilities, institutions for mental diseases, intermediate care facilities for the mentally retarded, and other hospital settings. Institutional settings have their own Medicaid funding streams. Home and  Community Based Services, such as those covered by Michigan's HSW for people with DD, are intended as an alternative to services provided in an institution. Another prohibition is that HCBS funding cannot be used to pay for room and board. In other words, the funding is for services provided outside of an institution and not for housing and food.

Although Congress has had many opportunities to further restrict HCBS funding in Medicaid law, it has apparently chosen not to do so. The standards that CMS proposes, however, would limit HCBS funding to settings that meet the narrow CMS definition of "community". 

"Rebuttable Presumptions"

 The rules propose a "rebuttable presumption" that a setting is not a home and community-based setting if "it is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex". In addition, the Secretary of U.S. Health and Human Services (HHS) has the power to determine unspecified other "qualities of an institutional setting" that do not qualify as Home and Community-based settings.

One can assume that a "rebuttable presumption" is difficult to overcome.  The proposed rules do not make clear who is entitled to rebut the presumption (an individual or the person's guardian? the state?) and how and where do they do this? If the Secretary of HHS can apply standards that involve not only the setting in which one receives services but also the qualities of settings in close proximity and also has the power to determine unspecified other "qualities of an institutional setting", it would seem virtually impossible for any stakeholder to make a case that something is "community enough" or not "too institutional" to warrant HCBS funding.

The rule provides such stringent, inflexible discretion to find HCBS eligibility, that the "rebuttable presumption" opportunity is an empty one. Do the "unspecified qualities" also have a rebuttable presumption of not meeting the definition of "Community"? How does the Secretary of HHS determine the "appropriateness" of a setting absent knowledge of the needs of the individual? It would make more sense  to have a "rebuttable presumption" that the decisions reached by a person-centered planning team determine the appropriateness of services and the most integrated setting appropriate to the needs of the individual.

Community and Institutional Characteristics

In the proposed rules, CMS narrows the definition of "community" while at the same time expanding the definition of an institution. It defines the "characteristics of an institution" in order to restrict funding for settings considered to be too "institutional." This restriction will make it more difficult for many individuals to access services in settings appropriate to their needs. Medicaid law for Home and Community Based Services does not restrict services or settings in which services are provided to those without characteristics of an institution. The Supreme Court in Olmstead in interpreting the ADA found that,  "…nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” If institutions are not prohibited, why would CMS limit community services and settings based on their "institutional qualities"?


Harmful effects of CMS rules

Before moving forward on the implementation of these rules, CMS needs to assess the harm they might inflict. In Michigan, there are many innovative programs and residential settings that were initiated by families and exist partly because Medicaid waivers have been flexible enough to fund services for people choosing to participate in these programs. Many of these programs would not meet the stringent definition of "community", because they are specialized for people with more severe disabilities and serve them in congregate (though certainly not isolated) settings. They are very much a part of their communities, with strong financial and moral support from families, religious organizations, local civic organizations, and other community groups. Taking away HCBS waiver funding could jeopardize these programs or force them to start accepting only private-pay participants. Programs such as these should be models for the innovative ways they serve people with severe disabilities, for the ways they fund programs by marshaling  community and public resources, and for innovative ways of building communities for the people they serve, building on relationships with families and friends and expanding into the larger community in ways beneficial to both the community and the individuals served.
 
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Although the comment period for the CMS proposed rules ended a year ago, that does not mean that you have to wait passively for a decision to come down from the federal government on whether these rules will be implemented as written. If you object to these rules, send an email to Kathy Poisal at CMS and to your U.S. Representative and U.S. Senators. These rules do not have to be approved by Congress, but objections by your legislators in Congress can have an effect on whether CMS choses to implement the rules as written.  Congress can also hold hearings, ask that the CMS open another period for comment, and legislators can make their own opinions known, such as in this letter from Michigan U.S. Representative Bill Huizenga, and another letter from a Congressman in California.

Other suggestions: Make the subject line of your email a pithy description of the subject you are communicating such as "Oppose CMS rules CMS-2249-P2" or "Comments on CMS-2249-P2" . Make sure to include the reference to CMS-2249-P2 in the body of your email to identify the specific proposals you are commenting on. U.S. legislators usually respond to hand-written, personal letters from constituents, but these should be faxed and not sent by U. S. mail. (Because of security precautions, mail sent through the U.S. postal service can take weeks before it reaches a legislator's office.) Be brief and to the point. If you have a family member or someone you know who might be affected by these rules, say so.

Here is a link to the Federal Register for May 3rd, 2012 that includes the proposed rules CMS-2249-P2.

Other comments on the rules can be found here and here .

Other reasons to object to CMS-2249-P2: they interfere with the authority of guardians ; they undermine decision-making by the person-centered planning team; and they limit choice for all as protected by law.